IPF Has Changed My Life: Celebrating Rare Disease Day
As I write this, I have been living with a rare disease for 1,413 days. On April 7, 2016, my life was transformed from an active young adult to a chronically ill patient…
Living With IPF — Charlene Marshall
Charlene Marshall is a fiercely independent 30-something-year-old who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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My New Year’s wishes for the IPF community
Each new year brings an influx of marketing about resolutions, hopes, and wishes. If you’re like me, your social media feed is flooded with related ad campaigns this month. A new year often sparks…
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Pulmonary Fibrosis Complicates Small Tasks
When thinking of chronic lung conditions, you may visualize the use of supplemental oxygen or a person struggling with physically demanding tasks, such as walking up a flight of stairs. People living with idiopathic…
The Reasons I Socially Isolate Myself
Idiopathic pulmonary fibrosis (IPF) is a cruel disease. Characterized by progressive scarring in the lungs that prevents oxygenation, IPF slowly steals a patient’s ability to breathe. There is no cure for IPF, and the…
Negotiating with My Emotional Self: Internal Struggles of an IPF Patient
Have you ever had to persuade yourself to do something? I often negotiate with myself to complete tasks I don’t want to do by rewarding myself with something enjoyable afterward. That worked when I…
How Hobbies Can Help Patients with Pulmonary Fibrosis
Most of the conversations in the Pulmonary Fibrosis News Forums are about the physical and medical aspects of living with idiopathic pulmonary fibrosis (IPF). But occasionally we steer off-topic and talk about who…
IPF Feels Like a Roadblock to My Future
A roadblock to your future could be any number of things. Perhaps it is a new skill necessary to advance your career or the finances needed for a big purchase. Those are normal hurdles…
I Did Everything Right, So Why Did I End Up with Pulmonary Fibrosis?
As I sit down to write this column, I am having a difficult day. Following a recent column about vulnerability, I heard from many readers who said my words encouraged them to express…
This Is Who I Am Beyond Pulmonary Fibrosis
An emerging healthcare priority in the past decade has been patient-centered care. It is an idea that many facilities are still trying to define. Patient-centered care is simple to me: person first, patient…
It Takes a Village to Survive Pulmonary Fibrosis
You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature…
My Latest Health Setback Left Me Feeling Overwhelmed with Guilt
You would be hard-pressed to find anyone who hates pulmonary fibrosis (PF) more than the patients living with it and their caregivers. This chronic and debilitating disease, characterized by progressive scarring in the lungs,…
Being Vulnerable With a Chronic Illness Can Be Beneficial
One of my most vivid memories of my late friend Serena Lawrence is when we sat down to discuss my becoming a columnist for Bionews Services. I’d just been diagnosed with idiopathic pulmonary…
What It’s Like to Have An Illness That No One Knows About
Idiopathic pulmonary fibrosis (IPF) is a little-known, complex, and misunderstood rare disease. I hadn’t heard of it before my diagnosis at the tender age of 28, just over three years ago. Learning to live…
